Community partnerships for research and solutions

This post is by Leanne Chukoskie, Ph.D. Dr. Chukoskie is the Asst. Director Science Communication and Special Projects at Autism Speaks and Asst. Project Scientist, Institute for Neural Computation, UCSD.

Having not previously interacted with the National Institutes of Environmental Health Sciences (NIEHS), I didn’t know what to expect. I must admit a tendency to equate the National Institutes of Health with the pinnacle of ivory tower research and a somewhat “stuffy” perspective on science. I could not have been more off base in describing the inaugural meeting of the Partners in Environmental Public Health (PEPH).

The initiative aims to bring together academia and community stakeholders as partners in improving environmental health, and this was clearly a charge that the leadership and participants took seriously (read a description of the meeting). The passion of the people participating in this meeting was palpable. Many of the community organizers and research partners in attendance have been seeking solutions for local environmental problems for years. Spontaneous applause and whoops from the audience erupted in response to community-empowering comments or discussion. This wasn’t your typical scientific conference! After each discussion session, the moderators had to actively intervene to end the questions and suggest that the conversation continue over the next break, lest we get horribly off our time schedule.

At the meeting my colleague, Alycia Halladay, and I conversed with other public health advocates about what we and other organizations are doing to disseminate research findings to members of the community. How were we learning what issues concern the community most?How do we use that information to address those concerns? How are we delivering scientific information about autism to the public and are they “getting it”? These other groups wanted to learn from us, and we from them.

We learned about an exceptional program that trained portreros (trusted communicators in the local Hispanic community) in various aspects of environmental science understanding using hands-on science demonstrations. The portreros then met with other members of their community to convey needed information about local environmental risks surrounding a superfund clean-up site. Could we develop the resources to train our team of volunteer Science Ambassadors at Autism Speaks similarly?

We also heard an important presentation from Michael Yudell, Ph.D., M.P.H. of Drexel University who spoke about communicating autism research findings to the public in a clear, direct and useful manner. Citing the history of how “blame” has been used by different ways and different groups to identify the causes of autism, Dr. Yudell offered recommendations for improving the dissemination of research based on a meeting organized at Drexel last year

It is in meetings like this is where the rubber meets the road. There are so many areas of opportunity for autism, which is one of NIEHS’ priority areas of investigation, including opportunities for organizations and other community advocates to partner with academia and apply for grants. Most importantly, however, this initiative enjoys ongoing support from the government.. We look forward to making the most of the opportunities offered and working with you, the autism community, to make the changes we need most.

There is a wonderful group of young performers that are putting on a fundraising show called Move For Autism in NYC. The producer is a high schooler named Nicole Javanna Johnson from the Professional Performers Art School in Manhattan. These phenomenal young artists are inspiring and have a wonderful commitment to Autism Speaks. I just thought that you all should know that.

Leanne you really need to attend AutismOne in Chicago or the National Autism Association conference in FL or any of the many Defeat Autism Now conferences held throughout the US.

You will learn more about envionmental science and autism there than anywhere else, I promise you. Autism Speaks also needs to make a much bigger effort connecting with families regarding environmental science and its impact on our kids. Thousands of parents and dozens of enviornmental science experts attend these conferences and there are many, many Q and As with whoops and hollering in the background. This is where grass roots lives.

AS should fund scientific ambassadors to GO NOW to these conferernces. What people can learn at the NIH is so limited. Believe me, I been to many of those conferences and I know. Join us and attend a science conference w/ the community of families!